Shannon Marie Photography, LLC » Shannon Marie is a Lifestyle photographer that serves Northern Maryland and Southern Pennsylvania. Shannon Marie Photography specializes in Newborns, Children, Families, and Maternity portrait photography. In addition Shannon Marie also photographs Weddings, Events, and Sporting events for children and teenagers. Unique, Creative, Simply Beautiful Photography

Our Journey – Follow Up

This Sunday is the Autism Speaks walk in Baltimore. Many of you know that my son Chase has Autism and attending these walks have been something we have done and the support each year has meant so much to us.  This year we are unable to go, but fully support everyone there and will be there next year to walk beside the other families.

If you are looking for something to do on Sunday attend the walk.  There are so many activities for kids and the support is always welcomed. 

If you haven’t read our journey here it is Autism a Personal Story.  My hope by sharing our story was that it brought awareness, understanding, acceptance and to those going through it hope and the feeling that you are not alone. The messages and comments I received after posting our story were so touching and heartfelt and I was overwhelmed with responses. Support is such a big thing in any journey and we are so blessed that we have so much of it, even from those who have never met us and just follow my blog. 

Where has our journey gone since then…

I am so proud to say that Chase has been discharged from all therapies at Leg Up Farm where he was attending several hours of therapy a week. His therapists are still just a call or email away whenever we need support which is so helpful and comforting.

Chase had Behavioral, Speech, OT, Equestrian, Music, and Feeding.  He worked so hard for so many years.  While other children his age were in half day of pre-school he was in pre-school and then spent the rest of the day in therapy almost 5 days a week. When others were off for the summer he attended summer school and therapy 5 days a week.  There was never an off day.  It’s been so different lately not having so much to do, not on the go all of the time.  He is finally getting some time to relax and just be a kid.

Chase still has daily struggles, we still have daily struggles.  We still work at home on his Feeding, Sensory, and Occupational Therapy.  Everyday there is something to work on and he does most days, some are a struggle though. In fact, a lot of what I mentioned in our story I wrote in 2016 he is still struggling with and working on.  We are just in a better place with all of it though.

As far as speech somehow our prayers were answered and he is talking.  Really, really talking.  A few years ago I never knew if this day would come. I never knew if I would here him say mommy or I love you or anything.  To this day his little voice is still the sweetest sound and something I will never take for granted.  His progress has been absolutely amazing!  However, he still struggles. He can tell me facts about countries or name every Nascar driver and the sponsor of their car, but he struggles asking a child to play, holding a conversation with another child and most of the time when he does try he scripts a lot.  He will get there I just know it, but in the mean time it is hard sometimes.  Kids have said he is weird and that he talks funny and that to see and hear as his mother is just heartbreaking.  On the other side of things he is so very blessed with so many wonderful little friends that love him and stand up for him and accept him.   Some that have known him since the beginning when he was just baby Chase to them get excited when he speaks because he didn’t for so long and is just everything to us. 

Chase started first grade this year, and as usual I was so very nervous. We found a school we love and I trust that they take care of him and guide him everyday and that is so comforting to me.  So far he is doing wonderful!  I have found myself crying at least once a week.  Happy tears though.  Ill see a test or a paper he did and he got everything right. I am beyond proud because to me its not just a test, it means he is listening and understanding what he is being taught.  He is getting it.  This week I put money in his lunch box, which is something I have never done because he is still having feeding issues and part of me has been so afraid he would get confused or overwhelmed by it.  I did this though on Monday knowing they were having soft pretzels this week which he loves, but didn’t tell him that because I didn’t want to overwhelm him with thinking he had to buy one.  I gave him a five dollar bill and that evening when I opened his lunch box there was four ones. I said “Chase did you buy something at school today?”  He said excitedly “Yes I bought a pretzel in the cafeteria.”  Then I cried happy tears once again.  Its the little things. These little things though for us are the big things.  He is becoming independent and understanding and thriving in the world around him.  I could not be happier!

Someone asked me the other day if Chase knows he has Autism.  I had to say no. We haven’t sat down and spoke to him about it.  Maybe we should, but we just want him to be him. We don’t want him to think he is less or different. We tell him constantly being different then the other kids is ok and that is about as far as we have gone. 

When we were told he has Autism it was a hard thing for us to grasp and understand and accept.  We may be wrong, but I feel like discussing it with him at this point in his life will only lead to confusion.  Others may disagree, but it changes nothing.  We just want him to be a happy, healthy 7 year old boy finding his place in the world.

My Chase he is just so amazing!  Determined, smart, strong, persistent and so so loving! I  am so beyond bless to be his mom.  I can not wait to see what the future holds for my sweet boy.

After posting my last blog I was asked if I had any other advice for parents with a child on the spectrum or struggling with speech delay and sensory issues. I do, but I am no expert.

So parents, if I had the opportunity to sit and talk with you, here is what I would say…

The best advice I can give is just love your child for who they are.  You didn’t choose this, but they didn’t either. So be there for them, do something fun with them everyday, and never ever let anyone set limitations for your child.

Just take one day at a time, cherish your moments with your child and tell them you love them everyday.

A diagnosis of autism spectrum disorder (ASD) is hard, but not insurmountable.

You need to find what treatments your child responds best to. Unfortunately in most cases it’s trail and error.

Never give up!  Never stop trying to make it better. Never stop trying to learn and understand your child and the way they see the world.

Celebrate your child’s strengths everyday, aim high and believe!  I was told my son would never speak.

Allow this journey and experience to help you become a better person and to see the world differently and be grateful for the little things.

Acknowledge and appreciate every hint of progress, even the smallest thing is huge progress and really in some cases a miracle!

Remember, you are not alone.

Here are a few images taken Chase’s last week of therapy at Leg Up. Leg Up Farm was such a bright light for us on our darkest days.  I don’t know where we would be today without them.  Not only day they help Chase, but they helped me.  They guided me through what I needed to do, gave me things to read and resources, gave me advice and a shoulder to cry on. They also celebrated the victories with us as well and truly cared. Such an incredible place.  So blessed our path led us there. He looks so happy in these images because he was. He had rough days, days that ended in tears, but he really did love it and everyone there.

 

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